2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

The Future of Oncology Care with Personal
Health Records
By Henry Feldman, MD, and Elizabeth S. Rodriguez, DNP, RN, OCN
Overview: Personal health records (PHRs) and patients’ access
to their own clinical information through a patient portal
are changing the patient-physician relationship. Historically,
health care providers have been gatekeepers of patients’
medical records. Now, these portals provide patients access
to clinical information, electronic messaging with the clinical
team, and appointment and billing information. This type of
access supports patient empowerment by engaging patients
in their own care.
Patients desire online access to information. The health
care industry, like any other, must respond to the needs of its
consumers. Oncology practices face unique challenges to
meeting this need because of the complex nature of medical
records of patients with cancer . Health care providers worry
about the consequences of patients receiving “bad news”
online, thereby increasing patient anxiety. This anxiety may, in
PERSONAL HRs, also referred to as patient portals,
began in 2000 with Beth Israel Deaconess Medical
Center launching PatientSite online, 1 which allowed patients
to view laboratory results, medication lists, imaging
reports, pathology reports, and financial reports, and to send
messages to their health care providers. Early during the
implementation, there was much controversy about whether
patients would be frightened or overwhelmed by the technical
aspects of data and whether they would inundate their
providers with questions about the data in their record.
These concerns were most strongly raised by two groups of
providers: oncologists and psychiatrists. These fears were
not borne out over the 12 years since deployment of that
system, and in the intervening years, many large medical
centers and health care systems have developed and deployed
large-scale PHRs. As of this writing, tens of millions
of patients have access to PHRs sharing select clinical data
over the Internet in a secure manner.
As part of The American Recovery and Reinvestment Act
of 2009, the federal government, under the auspices of
the Department of Health and Human Services decided
that the US health care system would benefit from the
increased use of electronic health records (EHRs). To ensure
that government funds were allocated for useful progress,
a set of phased “meaningful use” guidelines were
enacted by the Centers for Medicare & Medicaid Services
that vendors and health care providers would have to meet,
under the auspices of the Office of the National Coordinator
for Health Information Technology (ONC-HIT). One of these
requirements in phase II is the use of PHRs. The required
features of PHRs include inpatient and outpatient data that
must be shared. As such, practices must start addressing
these issues in relation to their practice areas, including
oncology.
PHRs and patient portals are rapidly being viewed as a
way to encourage patient empowerment and engage patients
in their own care. Multiple studies have shown poor
retention of complex technical information by patients during
office visits. 2,3 In subspecialty fields, such as oncology,
extremely complex care plans are presented, with many
options and complications, and it is unreasonable to expect
e66
turn, increase providers’ workload by creating additional calls
or visits to the office.
These valid concerns require careful consideration when
implementing a PHR or patient portal into a practice. Providers
will benefit from a clear understanding of actual compared
with potential risks and benefits. Much of the concerns about
the negative effect on providers’ workload and the potential
increase in patients’ anxiety have not been borne out. On the
other hand, the implementation strategy, governance structure,
and end-user education are crucial components to ensuring
success.
Successful implementation of a PHR or patient portal affords
the opportunity to improve patient satisfaction and
increase efficiency in provider workflow. The possibility exists
to improve patient outcomes by engaging the patient in
decision making and follow through.
any patient to recall everything from an office or inpatient
visit. These tools can help leverage your time and improve
patient-physician communication. 4,5 However, like any intervention,
these tools have a risk-benefit ratio and side
effects and must be managed carefully.
Governance
One of the most difficult issues practices face in implementing
this type of project, and particularly one that
crosses many stakeholder areas and needs, is governance.
PHRs involve a particularly complex area of governance, as
much of the data are regulated by various government
agencies, the data serve multiple purposes, the information
has not traditionally been intended for lay readers, and data
are being shared between content experts (providers) and
lay readers (patients and surrogates) who have different
ideas of immediacy, privacy, and explanatory material. All of
these factors need to be brought to the table in planning and
monitoring the implementation and use of a PHR. 6,7 Clearly,
representation by the facility’s stakeholders is crucial; these
stakeholders include the technical staff of the practice;
clinical staff, including physicians and nurses; informatics
staff; business operations; and, most importantly, patients.
Practices may also consider addinglegal staff, as PHRs are
becoming more regulated.
This governance structure has several key tasks to initiate
and monitor the project:
● Ensure that all regulatory issues are addressed
● Work with patients and caregivers to determine what
data need to be shared, when, and in what formats
From Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA;
Ambulatory Care Services, Department of Nursing, Memorial Sloan-Kettering Cancer
Center, New York, NY.
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
Address reprint requests to Henry Feldman, MD, Division of Clinical Informatics, Beth
Israel Deaconess Medical Center, 1330 Beacon St., Suite 400, Brookline, MA 02446; email:
hfeldman@bidmc.harvard.edu.
© 2012 by American Society of Clinical Oncology.
1092-9118/10/1-10